My experience of tragedy, trials, and triumphs!
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Thursday, March 27, 2014

What Makes a Winning Season?!?

*Fanatics is currently running a challenge called Family Fanatics, so I’ve decided to submit this story to be a part of the initiative. Fanatics is an online retailer of all sorts of sports merchandise and apparel: MLB caps, NBA jerseys, and much more.

We all say it when our kids are playing sports..."It's not about winning, it's about how you play the game."  I have heard coaches say this for years as well as parents.  But, do they really believe that?  Do they really mean it?  Is it about how you play the game?

It is more fun to win!  I have been on winning teams and I have been on losing teams...(when I say "I", I mean my kids)  It is always more fun to win.  However, there are good lessons to be learned from losing as well.  Sometimes in the world of sports, it can mean a lot more than just lessons in winning or losing a game...it can change a child's life!

I wonder what kind of coach I am going to be dealing with every new season we start.   In my 13 years of sports, 5 sons, playing baseball, basketball and football I have seen a lot of different kinds of coaches.  I still get anxiety when I see a coach from a baseball season 3 years ago for one of my older sons.  To this day that season still remains my worst season ever!!! I still feel a twinge of anger when I see Jordy's coach from one of his beginning years of football.  They figured out that he had a really high pain threshold and used him as tackling practice for his "X" men until I realized what they were doing!  There have been coaches that are there for one reason...promote their own son, (regardless of the son's abilities).  There have been coaches that don't have a son playing at all.  They coach every year the same age group for our baseball league just to provide an excellent learning experience from coaches that know the game.  (His adult son would come to some of the practices and he was a pro...of some sort?!)  The majority are just good Dad's trying to be involved with their kids and provide a fun year for their teams.

Once in a lifetime though you find a Coach like Rick Medina.  The first time I saw him I was terrified!  He looked really intense and was the coach for Jordy's team for 9 and 10 year olds.  He was showing the kids different baseball hand signals that he would be using.  It was clear he knew the game of baseball, and by appearances it looked like he planned on winning!  I looked over at my dad and said, "We are screwed!"

Jordy was pretty good at baseball.  He LOVES the game.  He is more athletically inclined than some of my "typical" kids.  But, he is autistic, and he has learning disabilities, including auditory processing which makes it hard to understand directions, and even harder to follow them.  His expressive language is much higher than his receptive language, which means...he talks like he knows and understands what people are talking about.  He will even tell you he understands...but in reality he doesn't have a clue of what you just asked him to do.  Up until this year he could blend into the other kids that were just a little naughty and didn't "want" to listen.  Not this year.  The kids have all matured and can understand and follow complex directions.  Jordy knows to hit the ball, catch the ball, and run the bases faster than anyone on your team.  That's what he could do, and that was all he was capable of.  I was going to have to tell the Coach that Jordy had a learning disability and would need everything simplified.  He would always need to say Jordy's name a few times, make sure he had eye contact, and touch his shoulder or arm to have any chance of Jordy knowing that he was talking to him.  It was still unlikely he would do what the coach asked.  I hoped and prayed that this intense looking coach would have some patience for him...and then I prepared for a horrible year, knowing that it was most likely Jordy's last season playing.

Well, I could not have been more wrong in my quick judgment of the intense looking coach.  Rick Medina is a man that knows what is important in this life.  He is a man that wants to teach his son more than just baseball, he want's to teach him compassion for other's that don't have it as easy as the rest of the players.  He wants to teach all the player's patience, kindness and the importance of every player on the team.  But more than anything he wants to make Jordy feel successful, he wants Jordy to know that he is a valued team member, and they couldn't do it with out him on the team.  He wants to build his confidence and provide an atmosphere where Jordy can feel like every other kid and progress in his baseball skills.  He is one of the nicest guys I have ever met.

The first year we played with him we had a losing year.  We won some games and lost some games.  But Jordy loved his team and loved Coach Rick!  They do a draft every two years in our league and I was thrilled we would get one more year to play.  Our second year playing the team really improved.  We were undefeated and having an amazing year.  I was amazed at Rick's patience for Jordy.  At times it seemed better than my own patience for him!  He never once snapped regardless of how bad his timing was.

-To give context to what it is like to Coach (or even be around) Jordy-

We call Jordy the question master.  He asks questions...well, constantly.  He wants to pitch every new inning...he isn't a pitcher.  He doesn't like to play out field because it's "too boring"...and he isn't afraid of saying it.  Last year he had his major OCD breakdown (click here to read about it) during baseball.  He would take his hat off to pray while playing second base every minute or so.  (The baseball season last year during that time was the only relief and joy that Jordy had from his OCD)  He asks the Coach questions during the game, regardless of what is going on almost constantly.  He interrupts the pre-game pep talks, the post-game pep talks, and through the entire game follows the coach around like a puppy dog asking his questions!

I worry every time that Jordy does this.  It wears even the best of people out.  Last season there was a time that I thought Rick would lose it, and I wouldn't have blamed him a bit.  We had an undefeated season so the pressure got more and more intense for keeping it that way with each game.  We had first place in our sights and the whole team could feel it.  Well, we had a few really bad innings and we were losing bad.  I can't remember exactly what had happened but I remember that something had caused our coach to go meet with the other coach and the umpire.  It was a heated discussion.  As coach Rick came back toward the dugout Jordy ran out to meet him half way...I could see the frustration on Rick's face with the call that had just been made.  "Coach, Coach, Coach, can I pitch next inning?" Jordy begged.  (Here it comes...he is going to snap at him and just crush him) I winced...trying to call Jordy back to the dugout.  Rick looked down at Jordy's face, put his arm around his shoulder and with a smile said, "we'll see big kid".  I couldn't believe the pure kindness I witnessed my autistic son receive...this in not something that happens often!

Toward the end of the season Jordy had been practicing his pitching and the Coach had promised to put him in.  Usually he would wait for a comfortable lead to put in kids that wanted to learn to pitch.  Rick had made a promise, so even though we didn't have a comfortable lead he put Jordy in to pitch.  I was a bundle of nerves watching him pitch, worried that he would do terrible and we would lose the game.  Jordy pitched 3 innings in a row striking out most of the players.  They didn't score any runs during all 3 innings and we won the game!  Everyone was cheering for Jordy!  He was the hero of the game and was on top of the world!  It was the highlight of his sports career!  He will always remember that!



During another game it would be the coach's son, Ricky that would cause me to wipe away tears at the baseball game.  We were down 3 runs and Jordy was up to bat, with 2 outs in the last inning of the game.  The pitcher threw fast and hard and it caught Jordy right in the back.  He dropped in pain, (which is very unusual with his high pain tolerance) so I knew he was hurt pretty bad.  Jordy tried to jump up and hobbled through sobs to first base trying to suck it up.  The bases were now loaded.  Ricky was up next...the coach's son.  With a swift swing of his bat he hits a Grand Slam.  The crowd went crazy!  We were jumping up and down screaming for Ricky and for our team!  We came back and won the game!  I rushed over to the dugout to meet Jordy in there and make sure he wasn't hurt too bad.  The team all ran out to Ricky to slap him with their mitts and cheer him on for hitting a Grand Slam and winning the game.  I watched as Ricky pushed through all his teammates and coaches and headed straight for Jordy, he patted him on the back and with sincerity asked Jordy, "Are you ok?  I'm sorry you got hit so hard!"  I honestly cried.  I don't know any other 10 year old boy that after hitting a Grand Slam would give up his moment of glory to make sure his teammate was ok.  Amazing coach=amazing son!

Jordy and Ricky

Last year we ended up in second place over-all.  Jordy will always remember that season.  The league made year books that could be purchased at the end of the season...I almost didn't buy one.  Jordy begged to get one though and I gave in.  He has carried that year book with him for a year now.  He reads and rereads it everyday.  He sleeps with it at night.  It has pictures of every team in the league and has the players names and coaches names in it.  I never really looked at it until a couple weeks ago when Jordy said, "Oh Mom, I just love reading this part!"  I finally took the time to read what the coach had put on our team page.  I had looked at it several times when he showed me...but hadn't read it.  Tears flowed again as I read the words that Jordy had been clinging to for a year.  The first couple lines tell the players names.  Then it tells about Ricky's awesome Home Run that won the game, and another kid on the team catching a game saving fly ball.  Then the words..."Jordy Jorgensen pitched a shutout 3 innings to secure the win for the Cardinals in his second debut of the year."  What a gift for the coach to give Jordy.  I thanked Rick at the next game that we had and told him about the tattered book that Jordy has cherished for the last year.



This year is our third year with Coach Rick and Ricky.  The amazing thing with Rick is that he didn't give up on Jordy once he found out that Jordy was autistic.  He has continued to treat him like all the boys.  Coach Rick has taken the time to figure out how Jordy learns best and coaches him!  He has helped him to continue to improve his skills and become a better player with each game.  Jordy thinks he is the best player on the team...and at times, it seems like he thinks he is one of the coaches too.  To most kids on his team Rick will always be the awesome fun coach that taught them a lot.  To Jordy and to me...Rick will always be the Coach that gave Jordy the best baseball years of his life.  He is the coach that has made it so that Jordy could continue to play in the same league as all his friends.  Coach Rick has made Jordy feel like a star player!  He has been the coach that has allowed me, the Mom not worry that Jordy is going to have a bad experience or be bullied.  Regardless of winning and losing the games, our years with Coach Rick will be remembered as the time when I saw a coach really understand that it doesn't matter if you win or lose the game, it's how you play the game. 

That is how to truly have a winning season!
Thank you Coach Rick and Ricky for all you have done for us...we will never forget it!

*Read my original blog post that went viral here!
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Sunday, March 16, 2014

Finding Peace in Finding God's Will...

Ten years ago I had a prayer that I offered very often. "Please bless Jake to be safe at work."  Usually, after that part of my prayer the words would come, "Please help me to accept Thy will in my life."  This prayer was offered several times a day.  I had a special blessing given to me in my youth, counseling me to 'learn to accept God's will in my life'.  I took that counsel very seriously then and still do to this day.  I continue to pray for it daily.  

In December of 2003 I began to have the feeling that something bad was going to happen to us.  Jake and I had many trials in our 7 years of marriage.  Looking back, they weren't too terrible of trials, but at the time they were hard for us to endure, and seemed to come frequently.  In December we had enjoyed 18 months of pure bliss; free from these trials.  We were in our dream house, had 3 perfect little boys and were truly very happy.  I developed a nagging feeling that something was bound to happen because things had been perfect a little too long.  I talked with Jake about my worried feelings.  He told me to stop looking for trials, and to enjoy that Heavenly Father was blessing us.  He pointed out that he was the Young Men's President and I was the Primary President and we were being blessed for living right and for our service.  I could see his point, but my bad feeling didn't go away.  I started praying about it regularly, asking Heavenly Father to bless us that nothing bad would happen.  Then one night my prayer was different.  As I thought about the impending trial, I heard myself say, "I can do this, I can get through this, with Thy help."  I was surprised by my words and immediately followed it up with, "Except Jake!  You can't take Jake from me please!"  Jake died 3 weeks later.  (Part of me still looks forward to saying to Jake, "I told you so!")

The words from that prayer stay with me today.  I knew...I believe that my spirit knew what was about to happen.  The words 'I can get through this with Thy help' remind me that I somehow knew Jake was going to die, and I knew I would need to rely on the Savior's atonement and my Heavenly Father to be able to get through it!  

So as I prayed for Jake's safety, I also prayed to accept God's will in my life.  I didn't realize how big of a trial was coming and why it was important for me to accept God's will in life.  When Jake died I understood why I was given that counsel and why it would be something that I should start praying for at a very young age.  I had 10+ years of prayers to back my plea..."Help me to accept Thy will in my life".  It is a prayer I will continue to have for the rest of my life. As the years have continued on, my desire to accept God's will has been increased.  I have realized that there is a purpose to what has happened to my children and myself.  There are lessons we need to learn and there is a plan for each one of us that required us to go through this devastating tragedy.  We are all different people than we would have been.  As my understanding of this has increased in the last 10 years, I have added to that prayer by asking, "Help me FIND Thy will in my life."

I have had a strong feeling that I should share my story and experiences in my life with people.  I have had many Priesthood Blessings given to me and they always say the same thing.  "It is important that you share your story, testimony and experiences with many people."  I have tried to be open about my experiences and I offer my testimony as often as I can.  About two years ago in 2012 just after Cam was diagnosed with 22q and all his other health issues I started having a quiet but intensely compelling feeling. "I felt like I should be doing something that I wasn't yet doing."  I needed to share my story.  I thought, pondered and prayed hard to figure out what it was that Heavenly Father wanted me to do.  I didn't know how to share my story more than I already was.  The timing wasn't right for me to really start doing more.  Cam had several tests and puzzles that would need to be put together in the next several months.  My baby girl was just 6 months old when the feelings started and she needed me home with her when I wasn't putting Cam's puzzle together.  But, the feeling persisted.  

I told a few people in our Stake that I would be willing to talk about my life experiences to a youth group or the Relief Society.  Shortly after I mentioned it the Presidencies were changed and nothing ever came of it.  I decided to just do what I could and continue to pray to be able to figure out what God's will in my life was.  Several months later my sister asked me to write my story for a girl's blog that she followed called My Name is Jacy.  She has a "My Name is"...series where she spotlights women who have had struggles in their lives, but have managed to be resilient and still be happy.  The blog series can by found at www.mynameisjacy.com. I was excited and nervous about writing my story.  I knew it was the next step I had been searching for.  The story was done in a 2 part series and was shared with over 6,000 viewers.  I was amazed at the response and how many people read it.  It was awesome.  I still had the feelings that there was more to what I should be doing, but it was nice to feel like I had found at least one way to share my story.  I put the story on my personal blog for Cam, for the purpose of being able to print it when I had Cam's blog made into a book.  There it sat dormant for the next 14 months.   

I continued to pray to be able to find God's will in my life.  I started to feel frustrated with the situation.  I felt that I had done all I could do to figure it out, but nothing was happening.  The feeling was overwhelming and at times it felt like a burden.  As I neared the 10th anniversary of Jake's death in January 2014, I asked Heavenly Father to allow the feeling to go away.  I expressed to Him that I felt I had done all I could do.  If there was nothing more for me to do then I needed Him to bless me with peace to know that I had accomplished what He needed me to do and I could move on.  Just three days after I offered that prayer there was a struggling widow on a closed Facebook LDS widow/widower's group.  I shared my blog post with her in the hopes it could help her find her path to happiness.  The next day we started receiving out of state text messages from friends and family asking us if we were aware that my blog was all over the internet.  We were not aware of it at all.  I couldn't even remember how to sign into my blog at first.  I hadn't updated it in over a year.  When I finally remember the password that Saturday night my post had over 45,000 views and was gaining 200-300 more views every 5 seconds.  The next day it reached 250,000 views and continued to climb.  I had hundreds of messages coming in from all over the world.  Amazing messages about love, acceptance, grief, inspiration, and testimonies.  The feeling was overwhelming, exciting, and very humbling.  My prayer was answered loud and clear...I am not done sharing my story and I haven't finished what Heavenly Father wants me to do.

In just 2 months the blog has reached all over the world and is over 600,000 views.  In February our local newspaper, Deseret News featured my story on the front page of The Mormon Times section.  I am starting to see the next steps I should take.  

I continue to pray that I will find God's will in my life and find people to help me accomplish this mission.  I was asked to speak for a widow's conference a couple of weeks ago.  I have thought about speaking for years but have had only a few opportunities to.  I decided that it would need to be a positive in my life if I was going to do it.  We still have a lot of stress and problems in our lives and I didn't want to willingly add stress.  I decided I would pray about it, but not really prepare for it.  I wasn't going to get all worked up and nervous and allow it to consume me.  I didn't want it taking time or energy from my kids or family.  I figured, I know my testimony and I know my story so I will literally go and teach by the spirit.  It will either be great, or terrible and from this experiment, I will know if speaking is something I want to do more of.  Luckily we had some step family drama come up the week of the conference.  I say 'luckily' because it took all my nerves and negative feelings and I truly didn't have the time to stress over speaking.  I think Heavenly Father knows me well, and knew that even if I tried to stick with my no-stress plan I wouldn't be able to.  So he added a nice distraction for me that would use up that energy. 

As I sat in the meeting just before it was my turn to speak I felt... relaxed.  I wasn't getting that nervous feeling in the pit of my stomach like I normally do just before bearing my testimony or giving a lesson.  I just felt calm.  When it came time for me to speak I said a little prayer that I would have the spirit guide my words.  I stood up and spoke for nearly an hour.  I wasn't nervous or scared.  The words flowed from me freely and I felt a feeling of peace and calm.  It was a sacred experience.  Curtis was amazing and came to support me.  He added a fun element of being able to come up and talk with me about our courtship and God's hand in our lives.  It was the first time in the last 10 years that I KNEW I was doing exactly what Heavenly Father wanted me to do.  I LOVED speaking!  By sharing my story, I was giving hope and sharing how Heavenly Father has helped me through these trials.  I was sharing a testimony of the atonement and it's healing power.  I was sharing the lessons God has taught me so that He could teach them as well

I have been asked to speak for the Stake Relief Society Women's Conference in Lacey, Washington in May.  I am so excited to go and meet the sister's in Washington and feel of their spirits.  I look forward to having more opportunities to speak and share Heavenly Father's message of his love to us during times of trial.  This isn't a path or plan that I would have guessed that I would be on.  As I find myself here though, I feel a tremendous amount of love for my Heavenly Father and Savior Jesus Christ.  I am in awe of the miracles and blessings I have received during my trials of faith.  I am thankful for all the things I have been taught in these last several years.  I am still trying to search and find God's will in my life.  With each new step I take I am finding great peace and comfort knowing that I am on the right path.  I am excited to see where these steps will take me, and I am so thankful to be even a small part of spreading Christ's love and light on this earth.  




My name is Julie and I have found peace accepting God's Will in my life.

I know that God has a plan for each one of us.  I encourage you to search for His Will in your life and be willing to submit yourself to His Will.  Submitting to His Will is not a passive thing as we are moral agents to act, and not to be acted upon. Have a true desire to accept what it is He is asking of you.  God has provided us a way through the atonement of Jesus Christ to be able to endure all of our trials.  I have a strong testimony and know that to be true.  With the hard things in our life many miraculous things come as well.  Look for your miracles and find joy and peace in YOUR unique path.  God loves you and believes in you.

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Friday, March 7, 2014

Good News for Cam!


All kids should go to the doctor for a "well-child" visit once a year.  When you have medical concerns or health problems there are a lot more Doctors to see than just your once a year well-child visit.  Cam's syndrome 22q11.2 deletion and PVNH causes global health and developmental problems because of the fact that he is literaly missing part of his genetic code.  I would like to say, that even though we go to more Doctor appt.s than the typical kids do...we have it pretty good in the 22q/PVNH world and I am grateful for that.  My heart goes out to all my online support group friends that have it much worse than we do most days.  All the kids are different...but they share one common thread.  They all have to endure way more than most!


Our annual "well-child visits" include: Neurology, Nephrology, Kidney Ultrasound, Cardiologist, Echo, Endocronologist, several blood work draws,  immunology (every 3 years), not to mention his ongoing Speech Therapy that remains weekly/biweekly appointments, and his actual "well-child" from his pediatrician.  We are at the beginning of all our yearly appt.s but got some slightly good news today from the Nephrologist (kidney specialist) that I didn't want to wait to share!


Drum Roll please....Cam's kidney grew a little bit!  It still isn't near the size they want it to be, and still shows no signs of Hypertrophy (compensating growth) for only being born with one kidney.  It is good news because last year he was worried that it was done growing.  We can hope and pray for continued growth.  His kidney function score didn't get any lower also!  It scores 85-90 which is just below the low normal standards (normal being 120).  It's not great...but it didn't get any worse, so we are thrilled!

What really kills me with this little trooper is his awesome attitude.  When the nurse asked him to pee in a cup today, he giggled and said, "sure" in an adorable little 5 yr old voice not pronouncing the "r".  He lays perfectly still as they are doing the Ultra Sound on his tummy and back until they have all the images they want.  He had to have his blood drawn twice in the last month and he didn't cry either time.  I don't know if it's worse than when I used to have to hold him down while he cried as they drew his blood.  I am glad that he has developed a tolerance and it doesn't upset him anymore.  But, it stings a little that he has had to endure it so often that it doesn't even phase him anymore.  No five year old should be ok with needles entering the veins! (Again, it really could be so much worse for him!)  We will enjoy this time when it's just follow up appt.s to make sure everything is ok, and continue to pray the appt.s always remain that way!


Hugs and kisses from this kid...truly fill my soul!  I love him to pieces and I'm so grateful to have him as mine.  I'm one of the lucky ones:)

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